Direct Support Professionals: A New Title for a Changing Profession

Caregiver – it’s a word we use for people who provide care for our children, our elderly, and until recently people with developmental disabilities.  It’s a term that seems fitting to the world because individuals with developmental disabilities are so often perceived as being sick, incapable, and people to be pitied.  Just as individuals with developmental disabilities have long been devalued by society, so have the people who provide their care.  Their duties are perceived as providing physical care, health care, and essentially being wardens of sort over the daily activities of their charges.  Although we still have a long way to go to overcome the denigrating views of the world about individuals with developmental disabilities, we are making some progress.  Part of that progress is recognizing that the role of the people who support individuals with developmental disabilities, as they live, work, and play in their communities, has evolved.  Their role is no longer a menial one and their title has changed to reflect that transformation.  The people who are advocates, mentors, teachers, and facilitators of community-based lives are now called Direct Support Professionals (DSP).

Direct Support Professionals provide much more than basic care.  They are responsible for helping individuals achieve goals and providing the support and guidance necessary for them to be productive, integral members of their communities.  This revised role requires more skills and greater judgment than ever before.  They also find themselves providing more individualized support in less congregate settings to individuals with a broader array of intellectual, functional, and behavioral challenges.

Perhaps one of the most difficult parts of the DSP job is assuring that individuals with developmental disabilities are respected and included in their communities.  How do you achieve that?  This is an issue parents have struggled with since their children with disabilities were small and excluded from educational settings and community activities.  Their presence in the community can be legislated and systematically required, but how do you gain acceptance and welcome in people’s hearts and minds?  Inclusion isn’t just about being present; it’s about being a part of something.  The DSP’s job is not just about helping an individual navigate the world.  Perhaps more importantly, it’s about facilitating the world’s interaction with individuals with developmental disabilities.

Overcoming public perception is difficult.  Just last month a newspaper article here in New Jersey explained the duties of Direct Support Professionals as, “People with autism and other developmental disabilities rely on direct care staff for help with everyday activities  — feeding, dressing and bathing, transporting them to jobs and social programs. “  The minimization of the role of the DSP mirrors the minimization of the humanity of individuals with developmental disabilities and their capacity for societal contribution.  Society has long dehumanized individuals with developmental disabilities referring to them with names that have become fuel for bullies taunts and bad jokes.  It is the curse of our world that we find it necessary to dehumanize those who are different, those who we fear.  Individuals with developmental disabilities often represent the dependence, the non-conformity, the vulnerability that are qualities, we, as adults, cower from, afraid that our own weaknesses will be illuminated.  So individuals with developmental disabilities have become a “less-than” group. Their ability to never measure up somehow a permission slip for exclusion.  Now they hover on the brink of enlightening the world about the insights they have to share and the commonalities too long hidden behind the walls of segregation. And we are asking our DSPs to be the bridge that makes this happen.  It is not an easy task.

In order to successfully do their job, Direct Support Professionals must recognize and honor the uniqueness that we all possess in our needs and wants, our gifts and challenges, and our goals and history.  Respecting this uniqueness in the people they support will enable DSPs to provide the person-centered supports critical to achieving quality of life and the ability to lead lives of purpose and value.  In order to achieve this, Direct Support Professionals face a number of challenges.

• They must not let their own preferences and values influence their facilitation and protection of the preferences and values of the people they support.
• They must commit to being advocates for the individuals they support when circumstances infringe on personal goals and meeting support needs.
• They must be attentive and creative in finding ways to understand the preferences and values of individuals with communication challenges.

In order to cross the line between caregiver and professional, Direct Support Professionals are required to conduct themselves with integrity and a high level of personal responsibility.

• They must maintain competency in what they do by seeking out learning opportunities and must use good communication skills with peers and supervisors as well as the people that they support.
• They must set an example with their behavior and actions for other DSPs, the people they support, and community members.
• They must always act ethically and request guidance when necessary.
• They must realize that their actions and decisions have consequences, not just for themselves, but for the people that they support.
• They must accept the critical role they play in the lives of the people that they support and develop and maintain professional work habits

Although the expectations for their role have changed within the developmental disabilities community and service system, public perception and acknowledgement is lagging far behind.  The perception that “caregiver” is a low end, low value job illustrates the ambiguous awareness of the value of the DSP.  A job, routinely defined in custodial parameters, in a profession populated primarily by women (89%), for a population considered less equal, less able, is understandably undervalued.  This is reinforced by inadequate pay rates determined by funding streams (primarily Medicaid) that still equate the value of DSPs with custodial care despite requirements for broader, community-based outcomes.

These factors are leading to inadequate numbers of Direct Support Professionals available to serve a growing number of individuals who need support and unprecedented vacancies and turnover in a profession few people aspire to join.  Young people may want to grow up to be a teacher, a therapist, or a nurse, but few look to the future as a DSP – robbing them of a profession that is both rewarding and meaningful.  Inadequacy in the DSP profession is directly related to the ability of individuals with developmental disabilities to lead community-based lives.  It affects their ability to develop and maintain relationships when too many people are passing through their lives too often.  It affects their ability to develop trust and confidence in the ability of the DSP to understand and meet their needs.  And, it affects the important relationship between the DSP, the individual, and the family members who must rely on DSPs to create a safe and healthy environment for their loved one.

The quality of life of individuals with developmental disabilities is inextricably linked with the people tasked on a day- to-day basis with providing their supports.  In order to value the humanity of one group, you must value the contribution of the other.  Formally changing their title to Direct Support Professional, reflects that contribution, and is a critical first step in assuring that individuals with developmental disabilities will someday enjoy respect, equality, and dignity in the communities in which they live.